Pain, Pain, Go Away! :(

Hi Friends!

     We left on a somewhat last minute trip up to the mountains on Monday and stayed until Friday morning.  Life still had it's realities, but at least I didn't end up in the ER this time! ;)  Ray and Joanna (bro & SIL) were out of town so we worked some on the walls of the nursery.  Definitely excited about the little niece who, Lord willing, will be coming into this world in December!  I got to feel her bumping around during our last trip up!  Surprisingly, I had never felt that before... I'm the baby of my family so I never had any little siblings on the way. :)  Anyhow, we had to come home Friday since Valerie has an appointment on Monday and I have to leave Wednesday for my tilt table test on thursday, but we hope to return sometime in the near future to help get the nursery ready!

Ezra has been great about going up the metal spiral staircase in the cabin, but not coming down!  This is him staring down, waiting for someone to carry him down. :)

All 3 of us (me, Ezra, and Bella) squished up together in my bed in our cabin. 

The PICC site with the silk stitches.  Very painful!

Now for the not-so-awesome stuff...In my last post, I was excited with realizing I was reacting to the ethilon stitches and got to change back to using the silk.  I thought I had seen the last of the stitch issues, but I'm afraid that wasn't the case.  The silk stitches looked great for the first day or two and then began doing the exact same thing as the ethilon.  After less than a week, two of the silk stitches were completely out because the main part of the reaction is the skin/meat "corroding" around them.  Its not that they are getting tugged a lot, the skin/meat around them just literally disappears.  This process is the definition of pain! {especially when your sister, who is changing the bandage, seems totally obsessed with scrubbing it clean!!! ;)}  As of Friday afternoon, they have switched me to prolene stitches (looks like blue fishing line!).  Sadly, they seem to be following down that very same road.  It could still be soreness, but I highly doubt it.  Only time will tell and we haven't changed the bandage since the stitches were put in.  So far, we can see redness around the edge of the gauze and I can definitely feel the pain.  I am soooooo tired of this horrid pain and the whole stitch situation in general.  Sometimes I sure wish the Lord would let me in on His perfect plan...then again, that could be scary! ;)

Stitching my PICC with prolene stitches...
and no lidocaine

Stitching my PICC with prolene stitches...
and no lidocaine

OH, and more happy news.....When I went to get the stitches done, it just happened to be on halloween weekend.  Yeah, some that really know my Ezra may know where I'm headed with this!  We get into the main entry lobby at the hospital.  On my left is the straw man, on my right is a witch, and directly behind me is a therapy dog...all in human form!  ACK!  I made a beeline for the elevators which were straight ahead, knowing that Ezra has a tough time with costumes (in his brain they aren't people, but rather "monsters") and he is terrified of dogs.  I no more than got in the little "cubby" where the elevators are and the therapy dog crosses in front of me.  I decided to stick it out and see how Ezra responded since he has been doing quite a bit better with his barking.  He growled....HE ONLY GROWLED!!!!!!!!  When I told him no, he then tried his best to run the other way.  Poor little fella!  But with this experience, he got to see that the dog didn't hurt him (nor even come towards him), he didn't bark, and he didn't run away.  That, my friends, was a HUGE step for him, especially since the attack!  I was so proud of him and sure let him know it.  While comforting him and reassuring him "see, its gone.  He's all gone and he didn't come to get you!", I look up and realize I have an audience of people waiting on the elevators.  Yes, awkward moment in a service dog owners life!  I just went on to explain to them that he had been attacked by a dog and is terrified of dogs.  That helped wipe that confused look off of everyones face.  Then, while waiting on the elevator, Mrs. Potato Head walks up and stands there, waiting on the elevator.  The whole time I'm thinking "oh Ezra, PLEASE don't bark at her!!" :)  Thankfully, I made it up to radiology without any major mishaps.  When we came back down, I stopped, surveyed the whole front lobby area for any possible offenders, found it was clear of any dogs or costumes, and zoomed on through.  I no more than get out of the door and, to my left are two minions!  Eeeek....I took off only to face spongebob and some other character (I don't remember which).  I conveniently waited until they were well out of sight before continuing on my way. :)  I was so thankful, though, that through all those costumes AND a dog, he only growled at the dog!  THAT, my friends, is a HUGE accomplishment for my little man!  The Lord knew I couldn't handle it much longer and has helped Ezra gain so much better control of his fears!

Ezra and I in bed this morning...the only position I could get my PICC halfway comfortable.

Well, as I mentioned earlier, my tilt table test is this Thursday.  Yay...maybe not.  I'm not too thrilled, but I will be very thankful when it is OVER!  We plan, Lord willing, to leave on Wednesday, stay in a hotel and have my tilt table test on Thursday.  I won't know the actual time for the test until we call Wednesday evening...just how they work tilt table scheduling at Duke. :)

Taking Life One Stitch at a Time,
                                              Allison

My PICC change went well.  I'm a bit sore, but that's to be expected.  The PA that did it this time was really good.  She inquired about the possibility of a Hickman, and I was okay with that, but my hematologist isn't up for that at this moment and told her no.  Probably because my mast cells are less than happy with life right now, for whatever reason.  I got the very same type of PICC line as I had, but their rep (who was out of town today) said she thought they had a double lumen (two access ports on the same line) silicone PICC now!  YAY!  It would be amazing if I could get a double lumen which would greatly lessen the amount of peripheral IV access I have to have due to not being able to unhook my continuous benadryl infusion to infuse something else through my PICC.  OH, and we made an interesting discovery today.....at some point in time, they changed the type of stitches they put in!  Just an interesting fact, especially with what has gone on lately with the stitches.  I had silk stitches for ages, and I don't know when they changed, but the PA identified the stitches I had this last time as being ethilon.  We didn't tell her our thoughts of the stitch situation before we showed her the pictures of the recent issues at my PICC, and she automatically said something about how it appeared I was starting to react to the ethilon and that I couldn't have those anymore.  She actually called the sores "corrosion".  She did everything she could to avoid those spots with the PICC and (silk) stitches, but she ended up having to put the PICC on top of one of the spots.  Thankfully she was able to avoid it with the stitches and said if it started to hurt or get irritated under there just to put some gauze under the PICC long enough for it to heal.  I was kind of relieved to hear the change with the stitches because anytime you can identify a trigger and avoid it...the better life is! ;)

I had an appointment scheduled with my cardiologist tomorrow (6 month check-up), but we called to check if he still wanted to see me tomorrow or if he wanted to wait until after my tilt table test which has now been scheduled for the 3rd of November.  It was decided that we should wait so my cardiologist appointment is now on November 30th.  I've been pretty faithfully taking my blood pressure lying down, sitting, and standing each day to record it for my electrophysiologist (dysautonomia doctor at Duke).  As I mentioned, I go for my tilt table test on the 3rd.  She mentioned "a lot of testing" at my appointment so I don't know for sure what all they are going to do...whether its "just" the tilt (that is enough to qualify for "a lot"!!! ;)) or if there will be other things involved as well.  All I know is I am going to need many prayers for strength and grace throughout this as I've heard how horrid it is from friends who have been through it.  It's a tough situation because I don't  really want to feel like serious crud throughout the test, but yet I really NEED to feel like that!  Go figure!  It's exciting to have it scheduled, because I feel there are maybe some answers out there for me, but I will be even more excited once it is over....unless I don't have enough energy for excitement! ;)  As far as the other testing that has already been done, my echocardiogram showed mild Tricuspid Regurgitation (haven't talked with the doctor yet) and I haven't heard anything about my blood work or heart monitor.  That's all I know for now.  I'll give you more info when I hear anything which will probably be after my tilt table testing.

There was yet another death of a mast cell fighter over the weekend. :(  Please pray for the lady's family and also the mast cell family as it always breaks us a bit when we hear of someone's battle ending.  It's amazing how much forums can bring patients and their families together with others fighting mast cell disease!  I know especially her husband could use a lot of prayer right now!

Well, I suppose that's all I have for you at the moment.  I hope everyone has had a fantastic day so far! :)

Allison

For The Love Of PICC Lines!

Just a quick update to let you know that I'm on my way to an 8:30 appointment to get my PICC line replaced.  The stitches came out and it slowly backed out of place.  I went to get the stitches replaced yesterday, but the PICC had backed out too far to just restitch it, and that hospital doesn't carry the PICC I need, so I have to go to the main hospital to get it done.  So, prayers for an uneventful PICC change are much appreciated! :)

Allison

On the stretcher in the ER, waiting to be taken to my room.  Who could not love that big poof ball of preciousness on my lap?? {1:00am is way passed Ezra's bedtime, so he decided my lap made a very good bed! ;)}

I'm not sure where to start.  The last couple days have gone a LOT different than I had expected!  In short...I came home yesterday evening. :)  I was admitted to the hospital Thursday night, got in a room about 3:00am Friday, and didn't get settled until 5:30am.  My arm started improving greatly on its own without any more antibiotics, so it was decided that I didn't have an infection after all.  You may be thinking "well, what about it responding to antibiotics??"....just hang on while I explain our theory!  So, I was up in the mountains on vacation when all of this started.  I went down to Charlotte for the first infusion of antibiotics, decided to stay home for the second infusion, and was on my way back up to the mountains while doing my third.  After those 3 infusions, my arm was looking TONS better.  We originally thought the "infection" was coming back from stopping the antibiotics when it began going downhill again.  However, we have since wondered if something up in the mountains didn't agree with my mast cells and caused this because I came home from the mountains on Thursday and between Thursday evening and Friday morning, my arm improved majorly without any intervention. Getting the connections?  Just in case you aren't, let me explain...I came down Monday and Tuesday and it improved.  Went back up and it declined.  Came down from the mountains on Thursday and it improved greatly (without antibiotics, this time).  THEN, here is the big thing...I got out of the hospital yesterday evening and, while waiting on Christina to bring the van, was exposed to a ton of triggers....it began declining again.  Yep, folks...sounds like my mast cells have found a new place to party...my PICC line stitches.  Thankfully, it does not appear to be a reaction to my PICC line and I don't have to continue antibiotics that my mast cells don't like right now, either!

They checked my tummy tube while I was in the hospital.  Sadly, the clips in my intestines have given way.  However, my tube was not completely out of the intestines yet!!  My tube had backed up a good bit and was coiled in my stomach, but they didn't have to find placement all over again because the tip hadn't quite made it all the way out of the intestines.  Probably my formula and meds were ending up in my stomach because the tip was backed out so far that it was just automatically pumping everything back into the stomach.  So, to sum it up...they had to pull out the part of tube that was coiled in my stomach, put a wire down the tube, and advance it back to where it was supposed to be.  And there was no mention of the need for J tube surgery!!!

Right now, I'm exhausted and not feeling so great.  I'm not sure if it just has to do with everything that has happened in the last few days or if its actually a good ole time, genuine flare.  Neither way is too fun.

NOW, to reply to a couple comments I received on my next-to-last caring bridge post...
#1...  "400 mg??!! How are you not passed out all day long?! When I had my picc and was on IV benadryl, I was told the absolute MAX dose was 50 mg every 4 hours (300 mg/day), and even THAT was really pushing it. Ideally, benadryl is not meant/suggested to be taken more than 25 mg every 4 hours, or 50 mg every 6. Never actually heard of a doctor going outside the realm of those dosing guidelines. I'm just amazed you're not sedated all day long..."

Because of the repercussions of mast cell disease (histamine release - allergic type reactions), Benadryl is a HUGE part of treatment for most patients.  Yes, the "normal" dose for Benadryl is 50mg every 4 to 6hrs.  However, after being researched, 400mg a day was declared the highest safe amount in a 24hr period for "normal" situations.  Above that has the ability to cause toxicity, a Benadryl coma, and, in the unfortunate circumstance, death.  Many, many mast cell patients end up taking a LOT more than 400mg in a 24hr period just to keep them alive.  I, personally, have taken much more than that within 24hrs (with medical supervision).  That was before my CDI (Continuous Diphenhydramine [Benadryl} Infusion) when I was having up to 12 dystonic reactions a day.  It comes to the point of no possible reasoning...yes, too much Benadryl can cause some really bad things, but it has been said that my disease would've quickly become fatal without it.  I guess I said all this to say, my doctor wasn't in the wrong by setting the max daily dose at 400mg because that is the researched safe dose even for the normal, everyday patient.  Many people are amazed, as you are, that I'm not sedated.  I hear "Are you not sleepy??" or "I'm out of commission for the day after only 1 dose!" a lot!  When I tell them no, they automatically go to the "immuned to it" theory which is also not true.  I have been on a consistent rate through my continuous pump of Benadryl for nearly 3 years and it is still working as it did that first day.  When you develop an immunity to it, you have to up the dose for it to become affective again.  My mast cell specialist once explained why many mast cell patients can take so much Benadryl without becoming zombies... The sedation comes when the body doesn't use up all of the medication and that allows it to make them drowsy.  With my body, my mast cells use up all of the medication and it therefore doesn't cause me to be drowsy.  Just a little interesting fact... the reason my pump is at 13.5mg an hour is because on the continuous rate of 14mg, I was very groggy/drowsy and was sleeping a lot.  13.5mg is what my body needs at a continuous rate and any more isn't used.  Sorry, this has become a VERY lengthy answer, but I just wanted to explain a little in detail....I hope you didn't mind! :)

#2... "maybe increase the other H1 or H2 that you use or do u take any benzo?"

My H1/H2 histamine blockers play a very important role in my treatment and I can definitely tell when I forget to take them, but aren't particularly more helpful for me at higher doses.  Benzodiazepines are a HUGE no no for me...they cause dystonic reactions.  Makes it difficult because most medical personnel always think my dystonic reaction is a seizure (looks almost identical) and automatically want to pump me full of Ativan which only makes it MUCH worse.  Never a dull moment in MCAS life!....

I want to thank all of you for the outpouring of love in the comments section!  I have been getting a ton of comments on my caring bridge posts and I can not even begin to find the words to tell you what those notes and your prayers mean to me!  I am so overwhelmed with how many people care about me and are praying.  Y'all have played an enormous roll in my fight with this disease!

I'm thinking today may be one of those "stay in your pjs, sleep, and watch movies" kind of day......too bad I had to unpack and shower. ;)

Taking Life One Day at HOME at a Time (hopefully we'll keep it that way!!)...
                                                                                                                     Allison

On My Way...

Well, I want to keep this short and sweet so I'll be replying to comments once I'm settled.  My final decision was to try to stick it out and see if things would continue improving instead of automatically heading to the hospital.  My doctor called, personally, yesterday morning to tell me that the hospital would give me Benadryl when needed (no matter what), may possibly try an IV steroid while impatient if needed, and informed us that one of my cultures came back positive, however it was highly suspected to have been a skin contaminant.  They sent it off for more testing, and he gave me 3 things that would MAKE me go impatient and those were #1) a fever, #2) worsening of symptoms (pain, oozing, etc), and #3) the cultures coming back positive after being sent off for further testing.  Well, no fever, and we don't know about the cultures yet, but the pain has worsened and the infection has opened up again with oozy discharge.  Long story short...I'm on my way to a hospital admission as I write this. :(  I'm to go through the ER and my hematologist has informed them of my situation, need for admittance, and approx arrival time.  Please continue to pray as I suspect this will probably be a week long stay for antibiotics.

Oh, and to top things off....I'm having symptoms of my GJ tube being out of place yet again.  Just what I needed. :|  My hematologist stands with me on the opinion that a J tube is just another mess to deal with and is too risky, so we have informed him of this issue, hoping he can help persuade the GI to hold off at least a little longer and redo the GJ!!

That's it for now, folks! :)
Allison

Decisions, Decisions... :(

Hello there!

        I apologize for the delay in updating.  I do have my reasons! ;)  SO, we arrived at the infusion center in Charlotte, had my blood drawn for cultures, and started my antibiotic infusion.  I was okay at first, but things quickly changed.  My head began horribly itching, my face felt hot and was red, my eyes felt puffy, and Ezra started alerting.  We informed the infusion nurse, she stopped the antibiotics, started a saline flush infusion, and paged the NP that was there.  They decided to continue the saline, do a rescue push of benadryl, and contact my hematologist to come up with a plan.  I began having abdominal cramps/pain, but the other symptoms slowly improved.  My hematologist decided to start the antibiotic back at a slower rate and gave permission to do extra bolus doses as needed throughout the infusion.  It worked better at a slower rate, although I did still have some symptoms.  I was sneezing like crazy due to my nose swelling, had some stomach upset, etc.  I got through it, though! :)  We had arranged with the home health pharmacy to leave the box of infusions and other supplies outside if we weren't there in time.  Due to the complications, we didn't get done with the infusion until after 7:00.  We headed straight there to pick it up, only it was NOWHERE to be found.  SOOOO, we called the after hours line at the pharmacy and, long story short, we finally got a call from a pharmacist who was coming, but would take 25 minutes to get there.  We just hung out in the parking lot until she arrived, went inside, and got my box.  It got to be SO late that we decided just to stop at home for last night's infusion and sleep a few hours before heading back.  Last night I pretreated, and during the infusion, I developed a rash along with the itching, puffy eyes, redness, fatigue, etc.  I decided to do a bigger pretreat this morning and I didn't have quite as bad of a reaction.  They said I have Red Man Syndrome.  We have a dilemma, though... The antibiotic has already made a humongous difference with the PICC infection, but the reaction is not backing down.  I still have throat itching from my 9:00 dose this morning.  We have been given a decision by my hematologist.  He is not comfortable with me having more than 400mg of benadryl a day at home which only leaves me 76mg over my pump.  Our choices are either...

1. Stop the vancomycin infusions since it has improved so much, and hope the PICC will continue improving.

Or...

2. Head to the hospital and be admitted to either continue Vanc or try a new antibiotic in IV form.  Most antibiotics I have tried have been oral, which can mean I react to the ingredients/fillers and not the actual medicine itself.

I don't know what avenue to take.  I hate the hospital, my family having to stay there, everything that comes with it, and I'm kind of skeptical with the issues of benadryl dosing...main question being, will they give me benadryl when needed??!  I just finished a 16 day hospital stay and want nothing to do with going back, but I'm not all that comfortable risking the infection worsening again, either.  I just need prayer for wisdom in decision making and peace with a specific choice.  Honestly, I'm scared, feel at least somewhat helpless, hate our vacation has to have this included, and I'm just plain exhausted.  I just really, really, REALLY want a week off to enjoy without this stuff happening.  Deep down, I know there are reasons for this and the Lord is going to get me through this...but my heart and mind are torn apart with life as it is.  I (and my family) just need your prayers right now!  This doesn't just affect me...my family rides the waves with me, and whichever route I choose to steer the boat, it has an outcome for them as well.  I have included new pictures so you can see the improvements the antibiotic has made so far.  The pain is MUCH better and the yucky discharge/oozing has dried up a lot!  And those of you who follow my journey and are nurses, I welcome your recommendation/opinion with this decision!

Taking Life One Exhausting Decision at a Time.....

                                                                      Allison

My PICC line before and after 3 doses of  IV antibiotics.

The grossly infected stitch on my PICC line before and after 3 doses of IV antibiotics.

Can't Seem To Catch My Breath...

Wow.  If there were a word for {out of breath} I would certainly use it right now.  Waking up whilst being told you have 45 minutes to get dressed and ready to go to be able to make it to Charlotte by around 2:00... yeah, that makes for a "running around like a chicken with its head cut off" kind of morning!  Anyways, now I'll explain why all the commotion and need to get to Charlotte.  Y'all already know about my PICC line pain, redness, oozing, and disgustingness at the stitches.  Well, the pain has not backed down and the stitch has gotten worse.  It's pretty good and nasty-through my eyes at least!  You will get a chance to view it yourself below to make your own judgement if you wish.  We emailed some pictures to my hematologist's nurse over the weekend and informed her of my latest ER trip. We received a phone call this morning, telling us that they were starting me on IV antibiotics (the one we already know is safe) and home health said the first dose has to be given in a medical facility before they will provide the supplies.  So, 2:00 is when I'm supposed to be at the infusion center for my first dose.  There is no confirmation that I do indeed have an infection, but a PICC infection is NOT something to mess with.  If left untreated, you become septic (sepsis - blood infection) which can quickly kill you.  They will take some blood cultures today (something the ER failed to do).  If it is an infection, we should start seeing some improvements over the next few days.  If this isn't an infection, there won't be improvement and we can look into the possibility of a reaction to the stitches, or God forbid, the PICC line itself.  Most likely, if it isn't an infection, it would be the stitches  IF I'm reacting to something.  I'm a bit bummed that our vacation was, yet again, interrupted, but I can't risk life for fun.  I have times that I'm greatly tempted to ignore everything medical/reality and just live... doing anything I please.  Problem is, I wouldn't live too long like that! ;)  Really hoping I don't have to interrupt things again, though!  I am very thankful for the amazing team I have working with me who actually have the heart to go out of their way to make sure I get to go back to my vacation and not have to end it early!  I'm very blessed to have them!

On a little bit of a different subject... My brother works part time as a volunteer firefighter/first responder.  Yesterday their station was part of a search for a man who they ended up finding after he committed suicide.  I can't seem to get that situation off of my heart right now, so I think the men that found him and that man's family could really use our prayers right now.  Would you take a moment, as the Lord lays them on your heart, to pray?  I can't imagine the heartbreak for those involved in this situation!

I have attached a couple photos of my PICC site below if you wish to view them.

Taking Life One Crazy Morning at a Time...

                                                       Allison

My possibly infected PICC line. Can you tell why it hurts and is excruciating when messed with??

A closer look at the nasty stitch from my possibly infected PICC line. Can you tell why it hurts and is excruciating when messed with??

All Clear!

SO...good news!  The ER docs took a look at it and said it didn't appear to be infected but more a reaction and didn't test for infection.  They did an ultrasound to make sure it wasn't a clot and that was all clear!  All in all, no infection or clot and I was discharged around 5:30.  Haven't made it all the way back "home" yet.  Thank you for your prayers and kind comments!  So very thankful things are okay.  Still in quite a lot of pain and it gets plain excruciating when my PICC site is messed with, but that can be caused by my mast cells...we just have to be safe and evaluate all other possibilities.  Would appreciate prayers that the pain would subside or at least decrease!

Now to get back "home" (til Thursday) and get some sleep!  I tell ya...I think I'm eventually going to be nocturnal! ;)

Allison

URGENT prayers needed!!!

Got home from Duke on Wednesday afternoon.  Stopped and got thigh high compression on the way home and those are working great.  Left on Thursday to go up to the mountains to stay a week with Ray and Joanna (bro & SIL).  My PICC has been hurting all day and worsened this evening.  Been exhausted all day and slept most of it.  Noticed some redness around the gauze under my dressing so we decided to change it to investigate further.  It was extremely painful to do the dressing change and appears I could very well have an infection. :(  SO, we are making the hour and a half trek to the hospital. There's one hospital 45 minutes closer, but we aren't sure they would have what I need.
Please pray! (Go to www.caringbridge.org/visit/allisonworkman for a picture)

Allison

A Wonderful Appointment...

Today has been long, but good.  I really, really, really like this doctor so far!  She is quite knowledgable about MCAS and EDS...and of course, dysautonomia.  When I got back to a room, the nurse did an EKG and three blood pressure readings - lying down, sitting up, and standing and noted what symptoms I had with each position change.  I made the machine beep when she took it while standing...apparently it doesn't like a 133 over 103 reading! ;)  The doctor spent a lot of time with me.  She asked a lot of questions and discussed some possible treatments, pending my direct diagnosis.  She thought, from my blood pressures today, that I might have hyperadrenergic POTS, but by my day to day symptoms/issues (low blood pressure), she is thinking differently.  She will be able to tell for sure after she does the tilt table test in the very near future (in the process of scheduling).  She personally will do the test.  Today, I had blood work, an echo, and a holter monitor that will record my heart rate and rhythm for the next 48hrs - like a 48 hour EKG.  With the monitor, I'm supposed to push the button any time I feel symptoms, and it will put a mark at that spot in the recording, but it actually records the entire time, opposed to the event monitors that I've had in the past...they only record so long when you push the button.  We were in the clinic from 9:30am until 3:30pm!  Over all, I think this was an absolutely amazing appointment!  She discussed, in depth, my salt intake, fluid intake, compression (and where to get it cheap), different medications that can be used other than beta blockers (due to beta blockers not being so great for MCAS patients), physical therapy and the importance of a therapist that understands EDS.  I had an absolutely wonderful and profitable appointment!

All ready for my echocardiogram! This pic makes my legs look SO long!

Getting the echocardiogram done.

After we left Duke, I decided to celebrate with a splurge to Rocky Mountain Chocolate Factory!  I haven't had chocolate in AGES due to reacting to it and it messing with my heart.  I have craved it for a LONG time now, so I thought maybe it was time to try it again....but not really! ;)  I had some WONDERFUL double fudge brownie ice cream and a not-so-awesome truffle.  I actually didn't react to the ice cream, but I'm still reaping the consequences from the truffle.  Sorry, but there are times in MCAS life that a girl's just gotta weigh out whether or not its worth it if she reacts.  Trust me....those with MCAS know where I'm coming from. :)  I really enjoyed myself, and it was totally worth it...at least the ice cream was!!

We decided to stay the night in our hotel room since it was getting so late and I'm so exhausted.  We would've had to pay for the night anyway since it was so late when we left the clinic.  The hotel was very nice and gave us until 1:00 to let them know if we wanted to cancel our reservations for tonight, so we left our stuff in the room thinking we would surely be back before 1:00.  Needless to say, we didn't make it back by 1:00.

I am very encouraged with this new doctor, and I really hope she stays this amazing! :)

Thank you for your many prayers!

Allison

Safe 'N Sound

Hi!

   We arrived at our hotel in Durham, got settled in, fed Ezra his dinner, went out to find the location of tomorrow's appointment and to get their supper, got back to the hotel, I got my shower, and now we are settling down for the night.  We are confused as to whether or not they are actually doing the testing tomorrow or if this is just an initial consultation.  The appointment slot is 40 minutes which would definitely not be long enough for even the tilt table test.  It could be that the 40 minutes is just for the consult with the doctor and then testing afterwards.  We don't really know.  I'm really hoping to get the testing done tomorrow so I can just get it behind me and not have to make the trek out here again for testing. It's rough, too, because we have our hotel reserved for tomorrow night, as well, to give me a little break after testing before traveling home.  We don't need that night if I don't go through the testing, but we don't want to cancel the reservation and then need it!  I think we have decided to pack up in the morning and then, if they do the testing, we can come back, but if they don't, we can just cancel and head home.

Please continue to pray!
                              Allison

Duke

Hello!

    Tomorrow I have a LONG awaited appointment in the dysautonomia clinic at Duke University Hospital.  To be specific...a 15 month long wait.  My cardiologist referred me for testing to hopefully pinpoint what exact type of autonomic disfunction I have.  Depending on what type of testing she does, it could be sheer misery to put it very mildly!  I'm nervous, a bit scared, and I'm totally dreading this!  She has really good ratings and I would love to actually know the exacts of what is going on because I think there are some types that have treatments.  I am prepared to stay on my current treatment (lots of water and salt) if what I have doesn't have another treatment or not a treatment that would agree with MCAS.  I just really hope this will be productive and helpful.  Now, this may sound weird, but I do NOT need you to pray that the testing will be as comfortable as possible or everything to go great because, with the nature of this testing, I really need to be sick during the process.  I just need prayers for safe travels, symptoms during the tests for results that point to a specific autonomic disfunction, grace and strength to go through the torture...and a fast recovery afterwards! ;)  My appointment is at 10:00 tomorrow morning.  We plan to leave around noon today, travel to Durham, figure out exactly where we're supposed to park/be tomorrow, stay in a hotel tonight, and then, of course, go to my appointment.  It takes around 3hrs or so to get to Duke from here and with my appointment being at 10....yeah, we would have to leave no later than 4:30 or 5:00 in the morning to give time to get there, get parked, and find the clinic!  That would be exhausting and I am NOT a morning person anyways! ;)  Another big prayer request is for comfort and peace for my Ezra during the testing.  He has started sensing when my blood pressure is going to drop and insists that I sit down.  With most of the testing, their goal is to make you faint.  I'm afraid Ezra is really going to have a hard time with this.  During one of my hospital stays, Ezra was alerting, but the nurses wouldn't treat me until they could see something happening...Ezra got so upset because no one was taking care of it and actually ended up vomiting. :(  It was absolutely pitiful, but the reason he alerts is because he knows SOMETHING is wrong and if I don't get my meds I'm going to be very sick, so it makes him extremely upset.  He is going to need a lot of prayer, too!

My GJ tube is working great!  I am on 100ml of formula per hour for 12 hours a day, however, if I try any longer than 12hrs, the formula backs up into my stomach and causes a reaction.  Thats when I quickly drain the formula out of my stomach and take care of things!  The first time it did that, I was soooo scared that my tube had come out of place, but, by the next morning, all was well and it was obvious it was just too much formula.  The longer it stays put, the more excited I get!! :)

My PICC line is doing fabulous!  Still no clot symptoms, flowing great, the "Y" (double lumen) extension has been a huge help, and my body is actually accepting it instead of trying to push it out like it did with all the other PICCs I've ever had!  It makes us wonder if I was mildly reacting to it all along and thats why my body was constantly trying to push it out!  It literally was, though....anytime the dressing would be changed, they had to keep a hold on it because, even though it was stitched in, it would slowly push it's way out from my arm!  This one appears to have begun forming its own little sheath for the PICC!  I'm just so thankful to have a PICC that isn't causing blood clots!!

Well, I better get off of here and finish getting everything ready to go! :)

Taking Life One Autonomic Test at a Time :(.....
                                                                      Allison